It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Brain & Nervous System Disorders Message Board

  • Chiari symptoms

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 09-15-2008, 01:55 AM   #61
    jellebeans
    Veteran
    (female)
     
    Join Date: Jan 2005
    Posts: 368
    jellebeans HB User
    Re: Chiari symptoms

    hi everyone,just like to say thank you again for all your help,ive found my scans and been looking on the web at pictures,i take it the tonsil bit..exuse my medical terms!!!! would like you say be coming downwards for chiari and normal across,on my scan its not right down and sloping but its not across either! its more like a normal scan but does hang a little lower but more oval shaped at the bottom.so im guessing i would rule out chiari?? the scans were takin in 2004 so i also wander if it could be showing the start of chiari or mild chiari? im not sure how down it has to be for chiari to be diagnosed.x

     
    Sponsors Lightbulb
       
    Old 09-15-2008, 03:09 AM   #62
    cindys601
    Senior Veteran
    (female)
     
    cindys601's Avatar
     
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Re: Chiari symptoms

    Hi Jellebeans~

    There is such a thing as mild or borderline chiari which is less than 5cm. Over 5cm is a true chiari. Alot of Dr's don't recognize chiari unless you have a large herniation. But even a small herniation can cause symptoms.

    My neurologist locally said no one would touch mine and it was 6 cm. I sent all of my tests to The Chiari Institute (TCI) in New York and they evaluate differantly. I had a 3cm. The herniation can be small, but wide and they do a cine MRI to check the flow of CFS fluid to see if its being blocked.

    They also check for other related disorders. I had tethered cord which is very common with chiari. With this, the cord is being pulled tight and dragging down the brain. Once they release the cord it springs up, relieving the pressure. I had this surgery in June and it helped alot of my lower extremity issues.

    I also have cranio instability so my skull is sinking into my spine. Thats probobly my next step in surgery. So there are many factors that play into chiari and that can cause the symptoms to occur.

    On your MRI, did it look like you had a tonsil affect at all? If you place a ruler under the drop, does it slant? Also, they look at the crowding next to the skull as well.

     
    Old 09-15-2008, 09:44 PM   #63
    Dpatt491
    Junior Member
    (male)
     
    Dpatt491's Avatar
     
    Join Date: Jul 2008
    Location: Fresno, Ca USA
    Posts: 27
    Dpatt491 HB User
    Re: Chiari symptoms

    OK everybody,

    This is it for me, next time you hear from me, I'll be an official zipperhead. I'm a little nervous, but prepared, I figure that in a couple of months, when everything is healed and the headaches are gone away, I'll be glad I did this. Now I have to clean up, they gave me a special soap to use, try to get some sleep, wake up, use my special soap again and go get it done. Again thanks for all the support, and I'll come back as soon as I can get back on my computer.

    Derrick

     
    Old 09-15-2008, 10:34 PM   #64
    scout316
    Senior Veteran
    (female)
     
    Join Date: Jun 2008
    Location: Aurora,IL,USA
    Posts: 643
    scout316 HB Userscout316 HB User
    Re: Chiari symptoms

    Prayers are going straight up to the Man for you Derrick...just remember you'll be feeling so much better soon! Take care and take advantage of the "room service" you get after the surgery!

    With Heartfelt Love & Prayers,
    Scout

     
    Old 09-16-2008, 02:57 AM   #65
    cindys601
    Senior Veteran
    (female)
     
    cindys601's Avatar
     
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Re: Chiari symptoms

    Hi Derrick~

    I do understand your fear and excitement at the same time. Your fear will be over soon and you'll be felling better before you know it!!

    Know that you'll be in my thoughts today and wishing you the best!! We're looking forward to an update once your zippered

    Take care

    Cindy

     
    Old 09-17-2008, 04:41 AM   #66
    jellebeans
    Veteran
    (female)
     
    Join Date: Jan 2005
    Posts: 368
    jellebeans HB User
    Re: Chiari symptoms

    hi im getting so confused now!!! have been looking at different scan pictures all week! in a strange way i was so hoping i would see something definate just to have answers to everything. ive compared my mri to a mri showing borderline chiari and it is very much the same but obviously being borderline it also looks like a healthy mri!
    when you say use a ruler is it the tonsil bit im checking for a slant? x

     
    Old 09-17-2008, 04:52 AM   #67
    cindys601
    Senior Veteran
    (female)
     
    cindys601's Avatar
     
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Re: Chiari symptoms

    Hi Jellebeans~

    What you may be looking at is a normal brain, which would be a good thing. When I looked at mine, it was a definate slant. I had found a site that shows how they measure and lines drawn on the brain to show you where the normal brain sits and below that line, is the tonsil drop. Maybe you could find something similiar for comparison. I wish I could look at it myself but we are not able to share here, unfortunately.

    Have a great day

    Cindy

     
    Old 09-17-2008, 05:08 AM   #68
    jellebeans
    Veteran
    (female)
     
    Join Date: Jan 2005
    Posts: 368
    jellebeans HB User
    Re: Chiari symptoms

    hi cindy,ive just been on a great website which shows where to measure,if i put a ruler on the basion to the opisthion my tonsil bit is sitting on the ruler,its possible it could be just a tiny tiny peice under but is a bit hard to say really. probably best if i can try and get mri looked at and checked properly.im in the uk so we have to be reffered by our family gp to see neuroligists etc. i did have my mri at a private hospital so i didnt have to wait on the very long nhs waiting list so i think my only option would be to see if i could send them back to be looked at x

     
    Old 09-17-2008, 05:17 AM   #69
    cindys601
    Senior Veteran
    (female)
     
    cindys601's Avatar
     
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Re: Chiari symptoms

    Hi Jellebeans~

    Its definately worth getting it looked at and reread. In the US, neurologists can be very difficult diagnosing chiari and don't even believe that a small herniation can cause symptoms. But it certainly can because even if theres crowding of the brain, it can block CFS flow and affect the nerves. I hope your health care system is more open minded.

    Let me know how you make out!!

    Cindy

     
    Old 09-17-2008, 05:22 AM   #70
    jellebeans
    Veteran
    (female)
     
    Join Date: Jan 2005
    Posts: 368
    jellebeans HB User
    Re: Chiari symptoms

    ive just double checked things before phoning the hospital ...and realised id placed the ruler in the wrong place,ive just done it now..in the right place! and tonsils definatly under the line,only abit but with the ruler there its visible. but its not really a pointy shape, just oval ..ish x

     
    Old 09-17-2008, 05:42 AM   #71
    cindys601
    Senior Veteran
    (female)
     
    cindys601's Avatar
     
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Re: Chiari symptoms

    Thats how mine is. More oval but definately sloping down. I thought when I was looking at mine, I was hoping so much for an answer that I was seeing something only in my eyes. But it was there, for sure.

    The other thing I saw on mine was the brain stem looked very flat and straight down. In a normal brain, its sort of round and plump. I learned that my brain was being pulled down from my spinal cord being too tight. So there is alot more that can be going on.

    I'm glad you were finally able to understand how to look at it and someone will help by looking at it too!!

     
    Old 09-17-2008, 06:11 AM   #72
    jellebeans
    Veteran
    (female)
     
    Join Date: Jan 2005
    Posts: 368
    jellebeans HB User
    Re: Chiari symptoms

    hi cindy,yes my brainstem looks flat and straight down too. i keep checking with my ruler as im the same,..wandering if im just seeing something there because i need too!!i obviously dont want chiari or anything but you do know yourself when somethings not quite right and after all these years of pain im sure it would actually be more of a relief to me to be told i do have it rather than be told im mental!!
    if it wasnt for reading your these posts my mri would still be in the loft collecting dust and i probably would not of even gone back to my doctors again as i had decided 2 years ago to give up and believe i just have a headache! so i really thank you for your help and advice. i will get my scans looked at..somehow! will let you know how i get on.
    take care of yourself,speak soon x

     
    Old 09-17-2008, 06:44 AM   #73
    cindys601
    Senior Veteran
    (female)
     
    cindys601's Avatar
     
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Re: Chiari symptoms

    It is so hard to be suffering and at the same time, our pain not being validated. Its crazy to even think of wanting to be told we have a cronic illness but for me, it was a sense of relief. You really start thinking yourself that maybe you are nuts

    I rememer the 1st time I read a post about chiari. I had been running myself ragged looking for answers and that thread was a heaven sent!! But there was still the battle to get someone to aknowledge my chiari. Do they have any chiari specialists in the UK? I would definately research that. I know people travel to the US from other countries to get proper care.

    I hope now that you've dusted off your MRI's, you can get some answers. Thats why its always good to keep records of EVERYTHING. I have a large folder with every test I've had done and always ask for copies of everything.

    Let me just say that having chiari is no picnic. It definately has changed my life. But I learn to rest when my body sends me signals and am very careful not to lift, push or pull anything heavy. I pamper my body to protect it from further damage. And even if you don't have chiari, but know something is definately not right, don't give up the fight and let those Dr's get the best of you. You have to find at least one who is willing to listen.

    I'm here if I can help

     
    Old 09-17-2008, 06:57 AM   #74
    jellebeans
    Veteran
    (female)
     
    Join Date: Jan 2005
    Posts: 368
    jellebeans HB User
    Re: Chiari symptoms

    i really havent got a clue if we have a chiari specialist so will definatly do some more reasearch before i go any further. i dont want my scans being looked at by someone who knows nothing about it.but i do know my doctor wont easily help me as he was at the point he just didnt know what to say or do with me anymore!!!just keeping my fingers crossed that getting them checked will lead to something,being told theres nothing wrong with me again and being sent home with no answers..again..would just be awful x

     
    Old 09-17-2008, 06:57 AM   #75
    cindys601
    Senior Veteran
    (female)
     
    cindys601's Avatar
     
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Re: Chiari symptoms

    Jellebeans~

    I forgot one more quick note. If the brain is being pulled down and your brainstem is looking flattened, you could have a tethered cord. Theres not alot of information out there on this. For me, I had alot of pain in my legs. It fealt like I had elastic bands tied around my legs and they just didn't want to move right. I had alot of pain and weakness in my legs as well. Also severe bowel issues and incontinence too.

    When they detethered my cord, the surgeon said it was severely tethered and its like cutting an elastic band and the brain springs up, not being pulled anymore. Since my surgery, my bowel and urgency to urinate have improved greatly!! My legs move like normal legs now. Its amazing how much it did help. My pain in my legs have improved too.

    I still have alot of unresolved issues. My head pain is still bad and I get stinging burning pain all over my body. So I know I need more surgeries in my future. But theres hope!!

    Take care

    Cindy

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Just diadnosed with Chiari yesterday clueless42 Brain & Nervous System Disorders 13 09-14-2010 05:40 PM
    arnold chiari malformation: Can the herniation shrink? susie3477 Hernia 44 07-21-2010 07:51 PM
    borderline chiari jellebeans Brain & Nervous System Disorders 16 04-24-2009 09:58 AM
    Chiari dozens of questions about symptoms dawn1214 Brain & Nervous System Disorders 45 03-28-2009 10:16 AM
    chiari jellebeans Brain & Nervous System Disorders 9 02-04-2009 07:39 PM
    Chiari I Malformation Question saint90ms Brain & Nervous System Disorders 4 11-22-2008 07:52 AM
    Diagnosed with Chiari and low B12 scout316 Brain & Nervous System Disorders 5 08-03-2008 05:22 AM
    Chiari Malformation Information cindys601 Brain & Nervous System Disorders 28 07-18-2008 06:27 AM

    Tags
    chiari malformation



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 12:11 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!